LifestyleHealth and Fitness


Woman living with rare disease shares importance of being your own advocate

Today is Ohio Rare Disease Day.
Posted at 10:34 AM, Feb 24, 2022
and last updated 2022-02-24 10:34:07-05

CLEVELAND — For years, Caitlin Young from Florida was living in pain with no answers as to why. Visits to multiple doctors without any explanation for her gastrointestinal issues left her frustrated. It wasn’t until she found a doctor at MetroHealth Medical Center, thanks to social media, that she could have a pain-free life.

In 2020, Young was diagnosed with Median Arcuate Ligament Syndrome, also known as MALS, a rare disease that can cause severe pain and discomfort. Dr. Kevin El Hayek, of MetroHealth, performed her surgery in November 2020, and now Young can eat and exercise without pain.

“I was told no by a lot of doctors, and if I was where I was now, I'd probably be on a feeding tube and not having any quality of life,” she says.

Thursday marks Ohio Rare Disease Day, and Young is sharing her story to emphasize the need for more research to be done on diagnosing rare diseases and providing treatment for them.

“There's a fair number of patient support groups out there, where depending on the symptoms, someone else may have had very similar symptoms that can then guide the patient,” said El Hayek.

There are more than 7,000 identifiable rare diseases, with 45 million people in the U.S and more than 400 million people worldwide seeking treatments.

On Thursday, the Ohio Rare Action Network, local advocates and community members are meeting virtually to address the challenges surrounding diagnosis, access to treatment and lack of approved treatment options for rare diseases.

Click here to attend the event.

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